IL-2 fail?

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2/4/2011 10:06am
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Replies: 19

Well it's been three weeks since I did 8 bags of IL-2. Had scans last week and there looks to be new tumors in the lungs. Damn!

My dr. said there's a small chance if we redo scans in a few weeks it could show better results but we are both not counting on it.

I don't remember much of the actual IL-2. I was out of it most days. Hubby said after bag 8 I was unresponsive so Dr made the call to stop. I was hoping to take a week off then do more but had a tough recovery.

Came home on oxygen, stats were a bit low but feeling better now. Back to work.

I just had a clean brain MRI(whoo!) so I got tested for B-RAF. Hoping that comes back positive and I can get on the trial. It just (within the last week) came to my hospital so I'm positive it could work for me. I'm feeling down and frustrated, I was really hoping IL-2 would do something for me. My cancer seems to be picking up lately and it scares me.

In other crappy news my friend who did the ALT trial with me is having a rough go of things. A few weeks back tumors were found in her brain, she did radiation and seemed to be doing okay. Tumors were gone. Her lung tumors seemed to be responding very well to ALT. Then on Wednesday of this week she was taken to the hospital unresponsive. Found to have numerous new brain tumors. She was moved to Pallative care yesterday. I'm sick to death of this. She has 3 young girls, she's just 36. I don't know what to say or do for her family. I went to visit and cried like an idiot. I don't understand, I just saw her last Friday.  Can I scream now? Please keep her and her family in your thoughts.

 

Kellie(from Iowa) Stage IV, waiting to do B-RAF????

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

lhaley - (2/4/2011 - 11:08am)

Kellie,

I hate this crap that we are going through. Somehow they should have a way of knowing if the IL2 is going to work before you put your body through that only to come up with additional tumors.  I hope you are B-raf positive!!  Does your hospital have any of the combo trials or is it the compassionate use?

I am so sorry to hear about your friend. With this illness we meet people we would never have met before and get close bonds. Sometimes that's what keeps us going. I've often thought of it as the positive part of the melanoma journey. The hard part is when we see our friend and their family suffer.  Scream and cry, it actually does help us feel better.

You have been so strong, sending positive vibes,

Linda

Suzan AB - (2/4/2011 - 4:35pm)

Well Shit, KellieSue...I am so sorry to hear about your Friend and IL 2's  failure... I usually swear .... a lot, and scream, not so much, but I do curse out loud...Mother F'er.  Sorry if I offend some, but this is how I fell.  So, Kellie keep fighting, crying and do a couple pounds...it helps...beat the f'in stuffing out of that pillow...Hahahaha that was for you Sharon in Reno...

Then don't forget to laugh!  Get Laughing out-loud!!!

Good Luck Kellie-Bellie, cute girlie-girl.

My best,

Suzan AB

Stage IV w/frigin lung nodes

Presently...One Day At A Time.

Suzan AB - (2/4/2011 - 4:37pm)

heehee I meant feel...

so I fell when I feel...

Presently...One Day At A Time.

Suzan AB - (2/4/2011 - 4:39pm)

do a couple of "pillow" pounds...I gotta go eat something...can't type a thing

Presently...One Day At A Time.

Suzan AB - (2/4/2011 - 4:42pm)

do a couple of "pillow" pounds...I gotta go eat something...can't type a thing

Presently...One Day At A Time.

Shelly in Switzerland - (2/5/2011 - 1:49pm)

Kellie I am so sorry to hear that the IL-2 did not work.  I was really hoping and praying that you would be a responder.  I am so sorry.   I pray that you are b-raf positive.  I am one of the lucky ones to be a responder to the Roche drug.  It has been 9 months and I am still responding. 

I  will keep you in my prayers as well as your friend.  I pray that you can find the kind of peace that God offers in your journey with this cancer.  I will hold you in my prayers morning, noon and night. 

With peace, love and hope,

Shelly stage IV

ValinMtl - (2/5/2011 - 2:28pm)

Dear Kellie,

What a nightmare melanoma provides for us.  I'm praying that IL-2 starts working 'FAST' and 'SOON'...if not please be B-RAF positive, so many have responded well to the B-RAF trial.  I cry when I hear about young families such as your friend's being attacked by this monster and I can certainly understand why your broke down..you didn't cry like an 'idiot', you cried as the caring person you are...I am sending prayers both your way and your friend's.  Val, stage IV, currently compassionate ipi.

P.S. It's fine to scream and cry...I've been doing it quite a lot lately...releases the stress from your body...without my husband present cause it's too hard on him.

Live Laugh Love
Nothing is worth more than this day!

King - (2/5/2011 - 3:08pm)

Kellie,

 

I am so sorry to read this news about you and your friend.  Of course, you cried, when you visited your friend.  That was an honest reaction.  My gosh, how could you not?

Please try to take one day at a time and enjoy time when you feel well.  Hoping and praying that you are BRAF positive and that will be your magic bullet.

 

You and your family are in my thoughts and prayers.

 

Stay Strong
King

Stage IV 7/05 Liver mets

Anonymous - (2/8/2011 - 1:56am)

Kellie Have you had just one week of IL-2 or did you have one round (1 week IL-2 ,1-3 week break then 2nd week of IL-2 then several months off.)?  The standard protocol is to have one round followed by a month break then a scan then another scan a month later.   It is after this that a determination is made as to what is happening.  After my first week (May 2007) I had three weeks off then the second week of round one. Then scans a month apart for a couple  of months.  The protocal calls for a second round if there is less than a 30-35% growth at this point (They call this essentaily stable.).  My tumors spread from my lungs to my liver and then the IL-2 stopped its growth.  The liver tumors never started up again.  After three rounds of IL-2 and (20 months) the lung tumors went wild and tumor spread to other locations.  This 20 month delay advanced me to the point that I heard of a new Item that was not even in any formal trials at the time.  I talked my Onc iinto trying it and I was in the right subset of a subset of a subset of a subset (Mucosal melanoma with c-kit) for the drug, that was not approved for melanoma, to work on me.  That was in March 2008. I still have innumerable tumors but am fairly stable and usually enjjoy life.  (When I'm on top of the horse!) There is just so much that is being learned now..  It seems to be a little early to know if the IL-2 is doing any good are not.

My history is under JerryfromFauq in the profile sectio.

KellieSue - (2/8/2011 - 9:51am)

I just had one week, Jerry.

I had a pretty tough recovery, in hospital for a week(even after only doing 8 bags of IL-2) Home for 3 weeks on oxygen.

I thought I would have a week off then do more IL-2. Do you think doing another week of IL-2 would be worth it? To be honest I would like to try it before going onto B-RAF just in case IL-2 does start doing something. I think my dr. was concerned because I had water on my lungs and seemed to have some kind of lung infection. I'm fine now and am just waiting for B-RAF results.

I honestly wouldn't mind doing it again even though it was pretty rough. I dont' really remember it at all, I was out of it most days I think.

Thank you for your responses. Off to email the good dr.

Kellie(from Iowa) Stage IV since June 2008

Cancer Sucks. I'm so not done kicking cancers ass!
I have a lot of life left to live

debbieVA - (2/8/2011 - 9:38pm)

kelly....

 

IL-2 is heavy duty...no lie.  Don't throw in the towel...or let your MD throw in the towel.  If you have questions or concerns...please contact me.  I did 6 weeks of IL-2 over 11 months.  I fired one oncologist after week 4 ..... he threw in the towel on ME.  He told me IL-2 was too toxic for me....that it may kill me. Chances were Melanoma was going to kill me first.   I survived 57 treatments, all the side effects possible and am currently in my 4 th/ year of the' last 6 months of my life'. ...AND living LARGE.  

Contact me at grdngt@aol.com

 

Best to you ....

Debbie Stage 4 NED

Charlie S - (2/9/2011 - 8:04pm)

I'm not known her for mincing words, so bear with me.

Here is the deal with hi-dose IL-2..................you do one week on, one week off, one week on and then eithertwo or three weeks off and then scan..............that's a cycle or whatever, but that is the protocol.

 You, under the direction of your your onc did one week on ,  wait three weeks and scan.  That is outside of protocol.  Wayyyyyyyyyyyyy outside of protocol for IL-2.

Two questions:  1) Why did you not complete the FDA protocol, and 2) Based upon this incomplete protocol can you or your onc consider this a failure of IL-2?

Further, there IS not failure of treatment; either your body responds or it does not; it is NOT a matter of failure, it is simply a matter of whether or not your body responds to a particular approach.

................and here is a bit more for you to consider beyond your Onc has not not allowed the full protocol of Il-2 to work,,,,,,,,,,,,,,,,,,,,,,,,,,,look at DebbieVA.    She was blown off after a few bags as well, but she kept after it and told her docs to basically kiss her as they viewed her with affection from behind and she kept after it with IL-2. and she now has a body of her own not abiding to melanoma,,,,,,,,,,,,,,,,,and there are many others.

Jame from Maine also walked away as her doctors watched her from behind and she continued IL-2; just like Debbie, she now has control of her body.

Your news is not crappy to me, but rather a report of doctors not really fully knowing and understanding the possibilities at the expense of the patient.

Go ahead and scream, but look inward and don't think every doctor knows what is best for you.

 

Cheers.

Charlie S

KellieSue - (2/9/2011 - 8:16pm)

Charlie, thanks, I appreciate your candor.

My dr. is a melanoma specialist and does IL-2 all the time so I do wonder a bit about what he was thinking when he pulled the plug.

The more I think about the way I did IL-2 the more upset I get. I know my dr. pulled the plug because I was having a rough go of it, but doesn't everyone? I also had a hard time recovering. I was coughing for weeks and went home on oxygen, he wouldn't let me do it again until I recovered.

So I get it but I want another chance. I want to do it before I do B-RAF(if I test positive) I don't really want to be in another clincial trial because a) I don't know if I'll even get B-RAF and b) I get sick of all the rules I have to follow while on that trial.

So ya, way outside of protcol. Bottom line I want another chance, I get it's rough and it sucks but shit if I do the protocol the way it's supposed to and I don't respond fine but if I don't do it correctly then your right, Charlie!

Kellie(from Iowa) Stage IV

Cancer Sucks. I'm so not done kicking cancers ass!
I have a lot of life left to live

Charlie S - (2/10/2011 - 12:35am)

I'm going to give this one last shot for you and not your doctor, so please listen.

There is not one FDA protocol or clinical trial for high dose interleukin 2  that says one week on and then scans.  None. This applies to infusion and injection..

Outside of that, yes there are clinical trials that are exploring  cancer pathways, but they are just that, investigational.

So, to me, the choice is to drive what we know to the full extent known or to to blow that off in favor of the unknown.

 

..............that is what I would ask your "expert"; and I would also ask him or her whether they think their choice is better than your chance and are willing to bet their life on it, because that is exactly what they are asking you to do................................with your life, not theirs, on an opinion.

 

 

Charlie S

 

 

KellieSue - (2/10/2011 - 8:46am)

Charlie, I'm listening to you!

I plan on pushing for more IL-2(was I not clear in my earlier post. ;)

I'm not sure what my dr. was thinking when he pulled me off, maybe he assumed I wanted to stop. Whatever the case I'm gonna push for it, I'm gonna push hard.

Thanks again for everyone's advice and support.

Kellie(from Iowa) Stage IV since June 2008

Cancer Sucks. I'm so not done kicking cancers ass!
I have a lot of life left to live

Jerry from Cape Cod - (2/11/2011 - 10:06am)

KellieSue

You know we are all pulling for you.  Good luck with your Oncs.

Jerry from Cape Cod

It's about kickin' Melanoma's butt!

"Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

jag - (2/11/2011 - 6:42pm)

Kellie, I read through your profile and am amazed by what you have been through.  I am very sorry to hear about your friends disease progression as well.  You are definitely a fighter.  I have a feeling the reason your doctor pulled you from the IL2 was because of the fluid on your chest and the 3 week recovery on oxygen.  Tumors in the chest can block lymphatic drainage which will cause a fluid buildup.  If on the other hand, you are having a serious immune response which has caused microtumors to be visible on CT that would be a good thing, either way, a severe immune response is a severe immune response, and should be treated with respect.  It is ok for your doctor to put a hold on Interleukin 2 either way, your immune system may be mopping up the tumors as I type this and your body just needs a break.   A doctor's #1 priority should be the life of the patient, not the tumors.  Don't be afraid to change your path, or get locked into one treatment option.  If your doctor is a melanoma specialist, it is very likely he has dealt with this type of situation before.  It is ok to give him the benefit of the doubt. 

I have seen cases before on this board where people got the patient all hyped up about staying with a  single treatment against their doctors advice when other treatment options were available, one was  a golf instructor whose wife somehow got focused on requesting more and more IL2 despite it not working after the first round.  Everybody encouraged her, and I wanted to say something but I didn't.  This time I am saying what I thinking, which is that taking a break is ok, and that your doctor may in fact be right.

My top picks would be compassionate IPI, BRAF(if you test positive) and/or a vaccine from Oncovex(don't know if any trials are available.

Insert Generic Inspirational Motto Here

SuzannefromCA - (2/11/2011 - 5:38pm)

Hi Kellie,

I know there are different protocols everywhere around the world. I wish everyone would get their own specific plan based on their mutation. 

In my case, my mutation was negative for all the common melanoma paths. I can't figure that one out! My melanoma started on the surface of my eye, then I moved to stage IV in November 2006. My oncologist is big on Biochemotherapy. All I know, in my case, I am almost 5 years NED, although I continue to get local recurrences on my eye. i had a lung met too. I'm trying to remember all the drugs I was given, for sure I had Vinblastine, Cisplatin, Carboplatin, Temodar, IL-2 and Leukine. I did the Biochemo regimen for a year and a half. Hospitalized every 3 weeks for the first 6 months, and then it was "maintenance" (high dose IL-2) for the next 12 months with going in every 4 weeks at that point.

I was lucky. I completely responded to the therapy with no surgery to remove the lung met. I know this regimen doesn't work for all, but it did in my case. So far so good, I get scanned in May.

I hope you find out your mutation, please keep us informed. Sometimes you have to get another opinion or two or three,

~Suzanne

Every day I wake up is a gift!

JerryfromFauq - (2/12/2011 - 3:42pm)

Kellie here are several Articles I often refer to regarding IL-2 and cancer.

http://www.tirgan.com/melanoma.htm

http://cancerguide.org/rcc_il2hd.html

http://cancerguide.org/rcc_il2.html#top

http://nursing.uchc.edu/unit_manuals/oncology/oncology/docs/Interleukin-...

http://www.ajronline.org/cgi/reprint/156/2/281.pdf

     Pathogenesis of Pulmonary Edema During lnterleukin-2 Therapy: Correlation of Chest
Radiographic and Clinical Findings in 54 Patients.R

*****************************************************

My medical Oncologist (Melanoma Specialist) at UVA is Dr G. Weiss.  He helped develop the basic protocols for administration of IL-2 over ten years ago and still works with it on an ongoing basis .  He is the Oncologist that I refered Debbie to when she needed a new Il-2 Oncologist.

    IL-2 has been associated with capillary leak syndrome (CLS). This syndrome is characterized by an increase in vascular permeability that causes extravasation of fluid into the tissue spaces and decreased vascular resistance. CLS causes hypotension, renal insufficiency, respiratory distress and peripheral edema. Pulmonary congestion (dyspnea, cough, tachypnea, rales, hypoxia) and pleural effusion may develop related to CLS in the lungs. 

IL-2 is Immunotherapy which hopefully will set up the bodies natural killer cells to attack the tumor cells rather than chemotherapy which directly attemps to kill cells (both tumor cells and normal cells).

  Dr Weiss is personally involved for determination of each bag, ones various readingsand discussses with the patient which bags will be taken and which skipped and why. 

   I had several problems and Dr Weiss spread my 6 weeks of Il-2 out with breaks so that I wound up taking 19 months to get the six weeks in.  When the tumor growth again went into overdrive, Dr Weiss was not adverse to changing treatments to one that was out of his normal box of treatments to one that I had researched ard suggested.  He rsearched my suggestion and I have been on the new treatment now for almost another two years.

    If one is up to it, I generally recommend at least one complete round of IL-2 before making a determination as to whether or not it is working.  The referenced articles discuss factors involved with receiving the IL-2.  The specialized nurses at UVA told me that it is not unusual for 7 to be the maximum numbr of bags that ones body can tolerate in a week.  Everyone that I know has gained 20-30 pouds of water weight.  This is usually removed in 3-5 daysm following the last treatment, by the use of diuretics.

    One of the advantages of IL-2 is that there is normally a short recovery time so that one can move on to other treatments if it is not successful.

I'm me, not a statistic. Praying to not be one for years yet.